Pages

Tuesday, June 23, 2015

I
recently listened to the audio version of Elisabeth Tova Bailey's The Sound of a Wild Snail Eating
-- a beautiful, poignant and reflective book about surviving a
debilitating illness while finding beauty and wonder in an object of
nature and in quiet observation.

Bailey
was
an active 34-year-old woman when she was struck down with a mysterious,
flu-like illness from which she never fully recovered. Suddenly
bedridden and isolated from the outside world, she found solace in a
rather unexpected companion: a wild snail in a pot of violets given to
her by a friend. The snail was moved to a terrarium filled with
woodland plants, and as Bailey
began to observe, research and care for this enigmatic creature, she
found parallels to her own life. She writes:

“..the
snail had emerged from its shell into the alien territory of my room,
with no clue as to where it was or how it had arrived; the lack of
vegetation and the desert-like surroundings must have seemed strange.
The snail and I were both living in altered landscapes not of our
choosing; I figured we shared a sense of loss and displacement."

The
snail became a source of wonder and fascination to Bailey, and as
her illness forced her deeper into a secluded confinement, she found
comfort in this unusual bedside companion.

“Illness isolates; the
isolated become invisible; the invisible become forgotten. But the
snail... the snail kept my spirit from evaporating....Watching
it glide along was a welcome distraction and provided a sort of
meditation; my often frantic and frustrated thoughts would gradually
settle down to match its calm, smooth pace. “

There
was so much about Bailey's story and writing that, for obvious reasons,
deeply resonated with me. I saw myself in the descriptions of the
onset of her sudden illness, the isolation that the severity of her
affliction thrust upon her, and the sense of peace she found in
observing an object of nature. For Bailey, it was a snail; for me, it
is the trees, the wildlife and the cactus blooms that comfort me outside
my bedroom window each day. Something
else that struck a particular chord with me was Bailey's notation of
her glaring absence from the world she once knew. She writes, "From the
severe onset of my illness and through its innumerable relapses, my
place in the world has been documented more by my absence than by my
presence."This
sense of absence is something I've grown more acutely aware of in
recent years. I've always been conscious of it on some level, of course, but it seems to stand out
to me more and more as the years pass and I watch time and the lives of others slip by without my presence.The
degree of isolation that is brought upon those who suffer with this
disease, especially in its severest form,
is at times rather shocking. These patients are isolated not only from
the outside world, but often
also within the confines of their own home. Some must live in total
darkness and silence virtually 24 hours a day, unable to tolerate even
the
slightest hint of light or sound. As a result, they are also unable to
fully interact with the very people who live with and provide them with
care.In
my
own case, I currently reside with my parents; yet, I rarely see
them for more than about an hour scattered in small moments throughout
each day. Due to severe difficulties with speaking above a whisper, as
well as the problems I face with sensory overload, I find that more than
a few
minutes of interaction can be incredibly taxing. I struggle with the
influx of information (both visual and auditory), keeping my eyes
focused on whoever is speaking, quickly finding the right words to say
in response, and then getting those few words out clearly enough to be
heard. Sometimes, if my reply is more than I can say out loud, I have
to write it down on a piece of paper instead. Thus, even minimal
interaction can be deeply draining and, if it goes on too long, has the
potential of causing a
setback that can last for weeks or even months.It's difficult to see how much my parents (my mother, in
particular) must do for me on a regular basis, and yet, I cannot really
give them anything in return. They are each in their mid-70s now, and I
worry about the fact that, were they to become ill themselves, I could
not be there for them in any kind of real, tangible way. It's something
I do not let myself think about often. For now, I'm ever grateful they are each
still in my life, and that they are both healthy and strong.Of
course,
my limits in interaction are not discriminatory; they apply
to anyone who comes into my room. When my brother and his family visit
for a week each spring, I barely get to see them beyond
giving everyone a hug each morning, exchanging a few words about what
they've been up to, telling them that I love them, and perhaps taking
a few pictures of us all together on their last day. While I cherish
each and
every one of these moments, I long to participate as they go on
their daily sight-seeing adventures, or simply to hang out with my niece
and nephew in
my bed and play games or listen to all of their many
stories. Sometimes, instead, I will listen to them from afar, my eyes
closed, as they play or chat in
another room. Friends,
too, have inevitably been distanced as a result of my illness. In fact,
it's been 14 years since I've seen virtually anyone outside of family,
helpers and a few doctors. The only real exception is my best friend
from college. We studied a semester abroad together, backpacked through
Europe and spent two months after college traveling throughout the
U.S. She is like a sister to me and, prior to my becoming ill, we used
to speak on an almost daily basis. Now I see her for a few minutes
once a year when she comes to AZ with her family for Christmas. She and
her children give me hugs and gifts, tell me of their latest news and,
sometimes, her daughters will sing a song or two for me. Her husband
often simply greets and waves to me from the hallway. Regretfully,
that's the extent of her visit each year, as it is the most that my
health can withstand.My
own fiance and I have not seen each other since his proposal in 2008,
as we are both now far too sick to travel such distances (Jim lives
about 2,000 miles away). We still write every single day, often several
times a day, and not a moment goes by where I don't feel infinitely
grateful for his presence in my life. But I miss him terribly and wish
so much that I could see him again.As
someone who used to be highly social and active prior to getting ill,
these challenges in communicating with and being present to those I love
are unbelievably frustrating and, at times, heartbreaking to me.
There's been an immeasurable amount of lost time, and of irretrievable
moments never fully experienced. I've missed out on countless
milestone birthdays, weddings, anniversaries, holidays, parties,
recitals, plays, concerts and even just the daily everyday type of
things like casual dinners, going to the movies and chatting for hours
on the phone. As much as we all work around my circumstances as best we
can, I'm simply not able to be an active participant in the lives of my
friends and family in the way that I so yearn. Fortunately,
the
rise of social media in recent years has helped a bit in reestablishing
my connection to the outside world. Facebook, for example, has allowed
me to reunite with
many friends I had not seen or spoken to in years. Though I
am unable to spend much time online, I can generally check my
newsfeed for a few moments each morning, where I get to see lots of
photos of
all the many faces I miss, and hear about everyone's daily activities
and adventures --
without having to write long emails, which can also be quite
difficult for me. In addition, I've been able to meet new people I'd
otherwise never have met, and some of these new friends have become
very dear to me over the years. It's been wonderful to have
this outlet, and I am so grateful to now have that kind of connection.At
the same time, seeing and hearing about everyone's exciting lives on
a day-to-day basis can also be a stark reminder of just how much I am
missing out on, and of how absent I really am from each of my many
friends' lives.Despite
my circumstances, however, I cannot truly say that I am lonely.
Distanced as I may be, I still have the love and support of dear
friends and family, some of whom do their utmost to care for and include
me in their lives on a regular basis. My absence is felt on their end
as well as on mine, and I am reminded often that I have not been
forgotten.Most especially, I have the love and support of my fiance who, every day, affirms how
important I am in his life, as he is in mine. It is that love which holds me up and carries me through.I also know that, unfortunately, there are many others like me out there, fighting this
disease in their own forced isolation every single day, and we are each
united in our shared stories. Finally, much like Elisabeth Tova Bailey's wild snail, I have the wildlife, blooms and butterflies outside my
window. They remind me that there is a kind of beauty and
simplicity in merely existing and being open to each moment.
And,
in
this moment, my presence in this world -- though slowed, distant and
contrary to my wishes -- has not been fully silenced.
It makes itself known through the words I write, through small
gestures, through memories and through the hearts of the people I
love. In this way, it battles on and continues forward. And it will
never cease striving for its long-awaited moment of release.
Meanwhile, from my window, a little bit of grace:

"Survival
often depends on a specific focus: A relationship, a belief, or a hope
balanced on the edge of possibility. Or something more ephemeral: the
way the sun passes through the hard seemingly impenetrable glass of a
window and warms the blanket, or how the wind, invisible but for its
wake, is so loud one can hear it through the insulated walls of a house." ― Elisabeth Tova Bailey, The Sound of A Wild Snail Eating